Entry 1:
So no one told me that I would literally watch death happen. I always knew it was likely that cancer would take Brian from me eventually. But never knew about this part. As a planner that sucks. Someone should've warned me. In the same thought, Hospice is amazing and totally shitty all at the same time.
So here are my random thoughts for how to deal with it all.
#1: Read the Hospice provided book called "When the Time Comes: A Caregiver's Guide". It may make you think your loved one is dying before they actually are but better to be prepared than surprised. #readthebook! I also don't think it is a terrible idea to hang the book on some string with some chart paper and a marker on the door telling people who enter to sign that they have read the book or are entering at their own risk, which in turn waives their right to be scarred for life by what they might see or experience.
#2: One thing Hospice doesn't have a book for is "The Crazy Caregiver: What to expect of the psycho who stays on the couch and doesn't leave". Although this is a work in progress and hasn't been published here is just a start. 1. The caregiver will more than likely need Imodium at midnight on any random night. The fear on being on the toilet instead of bedside in times of need, may cause excessive crying over digestive issues no matter if the room is full of men. 2. The person will act drunk constantly. They may be telling a sad fear and then notice a grape on the floor that needs to be pointed out without taking a breath between thoughts. This may or may not happen but is more than likely. 3.They may be good at doing the hard stuff and making it all seem like a business transaction but then lose their marbles when they see a stretcher. 4. The caregivers teeth may feel like they're wearing sweaters even though they are brushed constantly. Just go with it. This too shall pass??? 5. May feel the need to organize the room or make a color-coded plan for an upcoming event. This too is normal. Accept your color on the chart and praise the hard work.
#3: Accept all the things. Gifts, money, food (not really cause this is great weightloss plan, unless you're already skinny of course, then eat those cocoa covered nuts), new earrings, free LulaRoe pelican leggings, a mermaid for your daughters party, raffling your upcoming football tickets for double their worth, etc. You get the gist. Be careful what needs you speak aloud because most likely someone will know someone who does the random thing you need or asked for and then it magically appears. Kind of like a genie lamp. So be careful with your wishes.
#4: Basic Hospice Rule: No matter how long you are here it's "Everyone gets what they want week." Even if that means grabbing the cashew out of the thumb finger grasp of your bestie who is trying to remain on the Whole30 diet through this madness. It's allowed. Cause in Hospice everyday is supposed to be the best day ever. So everyone gets what they want.
#5: When dealing with utility companies go for shock factor. Use the word death/dying...often. It may get them to bypass their insane privacy standards so that you can add your name to a bill. It works. 99% of the time. And then your stuff will not be shut off causing you to have to reactivate. As the social worker advised when dealing with Harper, "gentle honesty". Works with the companies too.
#6: Turn things around on people when dealing with things you never want to deal with. The phrase, "If it was your family member, what would you do?" This works! Do it!
That's all for now. Clearly I am not anywhere near the expressor and writer Brian is. But this was therapeutic. Love ya! Did I mention, #readthebook!
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